Triple negative grade 3 breast cancer

[isaxx]

I have just been diagnosed with TNBC grade 3. Appears to be stage 1. Surgery in just over 3 weeks. Just looking for experiences, outlook, etc. Does anyone else have any experience of this?

I had triple neg grade 2 stage 2 and a 2cm tumour. I was diagnosed in October 2006 and after wle surgery, fec-t chemo and 15 rads there was no evidence of disease and I have had no recurrence. It is a scary one but nothing like as big a threat as it was in the past.

Sorry to hear this, OP. I don’t have experience and I know it is relatively rare, so I am hoping you will find more people with experience.

Do you have a treatment plan, or will surgery suffice?

Grade 3 is not the best news. However DH had a Grade 3, Stage 3 cancer a while back and is now considered cured, knock wood. His surgeon was excellent but (NHS) treatment wasn’t fancy, just prompt and aggressive. It sounds like they are moving fast with you. That’s important.

Have you got a plan for self care?

Very best wishes

Thank you for your story. I feel like this is going to be the beginning of a slow and agonising battle with nothing but bad news until the end. It is comforting to hear of a positive outcome. All I can find online are cases of painful treatments followed by recurrence and then more traumatic treatment.
I am 49 with two children, 19 and 16. I had lymphoma 25 years ago with rads to chest. They think this tnbc is a delayed effect of that treatment. The worst is that this means I cannot have rads again. Have to rely only on surgery and chemo. Am holding it together in front of DH and children but feeling very pessimistic inside.

So far the treatment plan is surgery but I will then be passed on to an oncologist who will determine what's next. It will almost certainly involve chemo as I cannot have rads due to past history of rads 25 years ago to chest for lymphoma.
Also mourning the fact that my breasts will go. I Can't quite believe it. I've also heard such nightmare stories about failed reconstructions. Seeing plastic surgeon in 10 days to discuss options.

So sorry to hear this. I don't have triple negative but currently have grade 3 triple positive breast cancer in my thirties, also in my lymph nodes. The chemo was very tough but my surgical results were excellent.

I know another woman my age fighting triple negative breast cancer who has had a very encouraging scan halfway through her treatment, the same as mine, which suggests that chemo is also working very well for her.

I didn't have a full mastectomy, I had a licap flap reconstruction, and the results are amazing. From the front you can't really tell I've had surgery. I know my surgeon performed a nipple saving mastectomy on another friend of mine (kept the skin but removed all breast tissue) and her breast looked fantastic too, with just two tiny scars around the areola. Might that be an option for you?

I know it's nigh on impossible, but please try to stop googling. It won't help.

I was diagnosed with the most aggressive version of triple positive breast cancer in 2012 - massive 8cm tumour, lymph node involvement - stage 3C, poor prognosis for 5 year survival. I had a radical mastectomy and axilla (lymph nodes in armpit) removal, chemotherapy and radiotherapy, and then 5 years of hormone therapy.

11 years on from diagnosis, and here I am. Healthy, happy, living my best life, no recurrence.

A couple of things to consider:

• I didn't have a reconstruction as I was feel so over-medicalised and just couldn't face it, plus I too had heard lots of horror stories about the aftermath and things going wrong. I have zero regrets 11 years on. I wear a silicone prostethic breast in my bra, and you'd never, ever pick it. I totally forget that it's fake, and have grown used to my uni-boob. DH couldn't give two hoots, he's just glad I'm alive. So not getting a reconstruction is definitely an option.
• Chemo is shit, no two ways about it. But you can, and will get through it. Listen to your treating team and listen to your body. Rest, rest, rest, but also do a bit of light exercise if you feel like it. Eat well (don't diet!!) and think of food as fuel to help your body fight.
• If you can, get involved in support groups, either in person or online - I did both but in the end preferred online. I met two amazing women in my online support group, who I now count as my closest friends. Nobody knows what having cancer is like, except someone who's had cancer.
• Let yourself grieve, be angry, be sad, be numb. It's all normal.
• Take one day at a time. It's a marathon, not a sprint.

And finally, I'm so sorry this is happening to you. It is absolute shit, so fucking unfair, and cancer is a bastard arsehole.

Much love to you.

I am so sorry that you have this diagnosis & hope you get a treatments plan in place soon. I was diagnosed this time last year and had a mastectomy followed by chemo. I was also grade 3 stage but stage 2 which cared me silly. Mine wasn’t TN but was only weakly ER positive so needed to be treated aggressively.

I found the whole process more mentally than physically draining to be honest. My experience with the nhs was amazing and I chose to stick with them rather than use my work medical insurance as they were very prompt & organised everything for me (I was automatically referred following diagnosis after a routine screening). I was too scared to come off the nhs track as everything ran like clockwork & I didn’t have the stress of having to find my own surgeons etc.

I had a diep reconstruction - like anything there is a risk with this but mine healed perfectly & I’m really pleased with the result. Chemo was a bit of a slog but no where near as bad as I thought it would be.

I’m over all the treatments now & life has returned so some level of normality. The anxiety around recurrence does rear its head sometimes but I am living for each day & enjoying each day that I feel well. One good thing about this sh@tshow is that I definitely live more in the present now and don’t worry about things that may or may not happen in the future!

Things will fall into place for you once you get your treatment plan and that paralysing anxiety/feeling of impending doom you feel will lessen once your treatment starts - I was exactly like you at the beginning but it does get easier to handle as time goes on. I wish you well - it will be a bit of a slog but you will come out the other side xxx

I’m sorry OP 🙁 there’s a very supportive community over on the cancer thread https://www.mumsnet.com/talk/general_health/4767178-cancer-support-thread-86-stay-positive?page=40&reply=126355896
the women there have been wonderful to me when I’ve needed advice or a rant or a good cry (grade 2 stage 2 BC) I know some have TNBC and are happy to answer questions. Our main rule is “stay off google”. Maybe I’ll see you over there ❤️

Thoughts are with you!
I was diagnosed with triple negative cancer, stage 3, grade 3 at 36, eight weeks after DC3 was born.
They also found ER+ cancer in my other breast.
I had chemo for 6 months, then a bilateral mastectomy, then radiotherapy.
Because I have the BRCA2 gene, I also had my ovaries removed.
In October it will be ten years since my diagnosis and that 8 week old is now a stroppy pre-teen who is currently refusing to get out of bed!
Treatment is a slog, no double about it, and the recurrence rate is high for the first five years, but once you get past that it reduces greatly.
Like @thegreylady (hello!) I did not have reconstruction, and I use boost prostheses which are great. I also have a very cool tattoo!
Good luck!

https://www.mumsnet.com/talk/general_health/4811209-cancer-support-thread-87-everyone-here-is-so-supportive?page=4

sorry - posted the wrong thread! This is the current one.

Hiya,

I have TNBC grade 3, stage 4 breast cancer that has spread to my liver. I had it stage one last september, had 12 weeks of chemo and mastectomy. Had an added complication of having a tumour removed from my heart ( they found that doing the scans for the breast cancer )

Im waiting to hear what my treatment plan is on Wednesday.

The chemo I had, I was ok with really, just the fatigue wich I coped with, and then it started accumulating, so from about week 8 of chemo I was floored alot of the time. I didnt get any sickness or anything.

Hi, again OP -

It’s very good advice to stay away from Dr Google if you can! So I thought I would share with you that a brief search showed that 10 yr survival after a Stage 1 TNBC diagnosis is 92% —- really excellent. You are lucky this was caught early.

I also want to echo @OneTitWonder ’s comment about exercise. When we asked DH’s surgeon if there was anything we could do to help his odds, which were not good, exercise was the first thing he mentioned. You def need to talk with your own surgeon about this and from what I understand you don’t want to overexercise —- overstressing your body isn’t good. But I think moderate aerobic exercise such as brisk walking, swimming, etc is. And DH like OneTit found it helped him weather the chemo. There is growing statistical evidence that it helps prevent BC recurrence, also. But again, only your surgeon can advise.

Very best wishes

I was diagnosed with stage 2, grade 3 TNBC in 2018. I was treated with the NICE recommended trio of chemotherapy followed by surgery (a lumpectomy in my case) and finally radiotherapy. I’m almost 5 years clear. I’m not up to date with the latest chemo currently being advised as the treatment options were improving while I was in treatment.

I found a wonderful UK based support group on FB which really helped me to get through the treatment which took about 10 months in total. It’s a terrible shock when you first get the diagnosis but having the support of a well moderated UK group was really helpful to me. I would advise you to steer clear of Dr Google, you’ll always uncover the worst case scenarios. If you join a support group please be aware that the women like me, who are in remission, rarely contribute as we’re off in the real world living our best lives. Best of luck with the treatment.

I had grade 3 TNBC diagnosed a couple of years ago. I had chemo and surgery (mastectomy and DIEP) but didn’t need radiotherapy because my nodes came back clear. So you may be worrying over nothing regarding not being able to have radiotherapy as it’s not certain you’d need it anyway.

I am seeing the plastic surgeon in 10 days so will see what is possible. I am very slim despite having had to children. I am terrified I will not have enough fat to do a reconstruction. Going to have bilateral mastectomy to reduce risk given the triple negative status and my risk profile. Breast surgeon said nipple sharing might be an option. Wonder whether that would be safe.

Thank you for your story. Gives hope, though everyone's situation is different, which is annoying as one can never be sure that just because others are ok one will be too. I am definitely in doom and gloom mode. So far have ended up at the 'worst case scenario' end of the statistics in diagnosis of cancer type. This sets my expectations. Why should luck be on my side now?
Very interested to hear more about your diep reconstruction experience.

Thanks I will follow.

How good to hear. Thank you.

Unbelievable that it could go so quickly from stage 1 to 4. Good luck with the treatment plan and be well.

Thank you so much for contributing your positive story. This is so needed.

Fingers crossed! Thank you for letting me know.

Sorry to hear about your diagnosis. I've had breast cancer, grade 2 hormone positive though.
I had an immediate, nipple sparing implant reconstruction which looked great. Radiotherapy didn't immediately cause problems but several months down the line it didn't look so good (I knew there was a risk of this) and I may need to go for a DIEP reconstruction, currently waiting to see the surgical team. In your case, implant reconstruction could be a good option if you can't have radiotherapy.
I had my single mastectomy and reconstruction as a day patient, also due to Covid measures. The recovery was actually OK; the drain was a pain but I got a little bag from Drain Dollies which was better than the hospital carrier bag! They will likely do a sentinel node biopsy as part of the surgery. Do the exercises they recommend as it definitely helps.
I had to go back for a full clearance due to a tiny amount of pesky cancer cells in 3 of the 5 nodes!
Chemo wasn't fun but it was manageable. Strangely, going to the chemo unit felt quite reassuring and the staff were lovely.
The ongoing cancer support thread is a good place to go. You can drop in as you please. It's known as the thread nobody wants to join but is the most supportive thread where you can say exactly what you want.

Try not to worry about whether you'll have enough tissue for reconstruction. I am slim up top and the surgeon was in two minds over it. She said she would do it but I could have a fat graft if more was needed down the line because it was going to be a struggle to get enough tissue, so there are always different options. I think if I'd known how good the nipple sparing mastectomy looked before I'd had my surgery, I might have gone for that option because I do have rather a large scar which curves up my shoulder blade.

I thought what you mentioned about luck not suddenly being on your side now needed to be responded to. I am so sorry you've had cancer twice. It is so unfair and unlucky. But luck doesn't really work like that, does it. It isn't as though things will continue to always be bad news because that's what you have experienced so far. I felt exactly the same during my treatment - that I should always expect the worst outcome because that's what kept happening. I was told it probably wasn't cancer because I'm young, but it was. Then I was told it was just the one tumour but they found more early breast cancer in the same breast. Then my lymph node biopsy was positive. Then I found out it was an aggressive type and grade 3. And it just went on like that. I didn't have a stage because they couldn't say without surgery, but I was expecting to be told that I am stage 3. I was also told that most patients with my type of cancer need more chemo and only a minority achieve a complete pathological response. So I expected to be in the bad luck group again. But I wasn't! I am in the 30% of patients who achieve the complete response from neoadjuvent chemo and don't need further chemo after surgery. I had all of my lymph nodes removed and expected to be told that it was in loads of them and I'm stage 3. But they actually said it was in none of them. That can't be possible because it was confirmed by a biopsy, so my surgeon has asked them to retest, but she said that it points to cancer being in fewer nodes and possibly only one, suggesting that I'm only stage 2. I know it's really hard not to keep dwelling on the worst case scenario but everybody must do it and it can't be the case because most breast cancer patients survive.

I have recently been diagnosed with stage 3 triple negative breast cancer with two auxillary lymph nodes involved. I'm 66 years old, doctor is planning to have genetic testing done. Currently scheduled in 5 days to start chemo once a week for 3 months and then once every 3 weeks for another 3 months. CT scan in 3 weeks to see if it's spread anywhere else. Surgery not till end of year and then target radiation and possible continued chemo. Won't know till we see how this cancer responds to the chemo treatments.

Oh, @SandraGail that’s a tough one. Very best wishes to you.